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Would appreciate some blood test insights please...

DantesBeak

New member
Hi all,

If anyone could share some insights re your experiences I'd be very grateful.

Just some background info: I'm a 29 year old female who had shoulder surgery mid 2018 after a sporting accident. Have had a chronic dry cough since 2016 (worked in a factory) and multiple chest infections (6 times a year) since. My drenching night sweats started in Feb 2019 along with a persistent itch. Shortness of breath, chills and extreme fatigue prompted me to see my GP who did a CBC and a chest x-ray during this time. Results showed severe iron deficiency but otherwise all was normal (including x-ray).

Fast forward through the past few months I've had further blood tests showing the anemia hasn't improved (despite taking the prescribed iron supplements). I saw a haemotologist and was discharged from his service due to a "normal" CBC, but still severe anemia. I noticed my white cell count has steadily been declining (over 4 separate CBC tests), however, still falls within typical levels (at the lower side).

My GP has suggested I get a CAT scan done, but all this fuss is starting to make me feel like I'm wasting her time. Naturally, I want this to resolve and to find an explanation but surely if the haemotologist has cleared me, I'm not at risk. Nausea, lack of appetite and stomach pain have been added to the recent mix of symptoms. I have no visible lumps.

I guess I'm asking if any of you got diagnosed with lymphoma despite having "normal" blood tests results? Would you advise me to get the CT done as a precaution? I hope I'm not coming across as too neurotic - it's hard for me to gauge how much further to push the investigations.

Thank you in advance for any information you may have. Wishing you all a full recovery and gentle path to healing.
 

Mankyle

Member
I have taken a look at my blood tests from my diagnosys and I can tell you that only a flow cytometry yielded conclusive results...
CBC was ABSOLUTELY normal...
Which, by the way, it is quite common because in lymphoma the disease starts in lymphatic node not in the bone marrow therefore CBC alterations appear only in advanced disease (it is lymphoma not leukemia).

Remember that:

Hundreds of disease can cause your symptoms. It doesn't have to be a lymphoma.

In fact, with your age I could 100% guarantee that if you had a lymphoma it would be an aggressive one.... indolent (slow Growing lymphomas) usually don't appear before being 40 years old.
That said, being 29 years old, if you had a lymphoma it would be an aggressive one, and with aggressive lymphomas you would have had big adenopathies in one or two months.
 
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DantesBeak

New member
I have taken a look at my blood tests from my diagnosys and I can tell you that only a flow cytometry yielded conclusive results...
CBC was ABSOLUTELY normal...
Which, by the way, it is quite common because in lymphoma the disease starts in lymphatic node not in the bone marrow therefore CBC alterations appear only in advanced disease (it is lymphoma not leukemia).

Remember that:

Hundreds of disease can cause your symptoms. It doesn't have to be a lymphoma.

In fact, with your age I could 100% guarantee that if you had a lymphoma it would be an aggressive one.... indolent (slow Growing lymphomas) usually don't appear before being 40 years old.
That said, being 29 years old, if you had a lymphoma it would be an aggressive one, and with aggressive lymphomas you would have had big adenopathies in one or two months.
Thank you for taking the time to reply, your response is most helpful. Lymphoma wasn't on my radar until my GP brought it up as a possible explanation for night sweats at my age. It has certainly been longer than two months with a much slower onset of symptoms so that is reassuring.
 

po18guy

Active member
Sorry to hear of this. Night sweats associated with lymphoma leave you absolutely drenched - all of your night clothes, even the sheets. This would normally be accompanied by spiking fevers, substantial (>10%) loss of body weight, often palpable lymph nodes and "can't-get-out-of-bed" fatigue.

Have you seen an endocrinologist? This may be hormonal. ted, potentially even thyroid related. As to hematology, the problem may be that hematologists may tend to think worst case scenario, i.e. leukemia or lymphoma. You may very well have a blood disorder that is not cancerous.

Lymphoma cells do not show in the blood until the disease is late-stage and widespread. By then you would be so sick that it would be obvious to any doctor. Leukemia shows in blood smears, so it appears that is not likely the case.

There are officially 68,069 known human illnesses and diseases, so with patience,you will eventually be diagnosed. Bear in mind also that some conditions are never diagnosed, so only the symptoms can be addressed,
 

NeoLilly

New member
I was 29 when I was diagnosed and you know the blood work question gets asked a lot and I honestly don't recall what blood work I had done early on. I had 2 ultrasounds of my neck done, 2 fine needle biopsies, a head CT (done at ER due to brain splitting headache that didn't respond to anything they gave me) but blood work, I do not remember. LOL

I presented with SVC syndrome and so my neck really was the focal point of the tests. It felt thick to me and I could choke myself if I tilted it to certain angles... in the beginning it would come and go. Doctors figured it was reflux but when reflux medications did nothing to help then they started to suggest that it was anxiety related. I refused to go on an anxiety medication because I knew it was not all in my head. So I didn't go back for a couple of months. Then I had a brain splitting headache that sent me to the ER. Again nothing was found. They did a head CT but nothing. (The tumor was growing in my chest)
That is when I went back to my GP and INSISTED I HAD SOMETHING WRONG WITH ME! She sent me to the ENT who I know thought I was worried about nothing, but he said to me "Fine I'll do another ultrasound today if it'd make you feel better". So I said YES. They found what they thought was a nodule attached to my thyroid so they biopsied it. Test came back fine. GRR! (It was not a nodule it was a lymp node)

I was sent home again home with no information. Then I can't recall how much later it was I felt a lump at my collar bone. I called the ENT right away to make an appointment. They scheduled me for a week or two out. However I got a call back within half an hour saying that the ENT would like me to come in that day. I was like today? IT's Friday afternoon.... so needless to say that is when I knew it was serious. He performed an ultrasound, FNB, and a full body CT (with contrast) that day. Monday afternoon he diagnosed me with Lymphoma. The following Monday I had my first Chemo.

My symptoms started around December of 2009 and I wasn't diagnosed till August 2010.

If you feel like something isn't right, push till you know what it is. Get the CT... if it comes back clear that is great. If you symptoms persist they you should persist till you know what is wrong.
 

DantesBeak

New member
OP here. I thought it important to follow up as I finally got my diagnosis in January 2020 after things went downhill very quickly over December 2019 with severe speech difficulties, headaches, vomiting and tremors being almost daily occurrnces. Having said this, I didn't have lymphoma but a brain tumour on my pineal gland.

On New Year's Eve I experienced a severe headache that came on strongly and quickly and I spent all night vomiting. I saw a doctor the next day who I hadn't seen before as my usual GP was on holiday. She told me it was a migraine and prescribed migraine medication. I had never had a migraine before and had never felt this unwell so because of the acute onset she reluctantly agreed to do a CT brain. The migraine medication didn't help at all.

The CT brain revealed a mass in my mid-brain but it didn't concern this doctor. I saw another doctor who ordered a MRI. It was decided that the lesion was "just a cyst" and an "incidental finding" meaning they decided it was not related to my symptoms. I was prescribed more medication for anxiety and depression and told to remove any stress from my life. This made no sense to me and my suffering continued to NOT be taken seriously by the medical profession. At this stage, my family was extremely alarmed. They live overseas and we could no longer communicate on the phone as my speech was so poor.

My mum managed to get me an appointment in Sydney to see world renowned neurologist, Professor Charlie Teo. He was the only one who took me seriously. Turns out this tumour had caused my cerebral aqueduct (also called the aqueduct of sylvius) to narrow to a point where my cerebral fluid was no longer able to flow properly. I had surgery to remove the tumour (which thankfully turned out to be benign) in February of this year. The tumour turned out to be almost twice the size as was presented on the MRI (2cm x 1.5cm). A follow-up MRI showed my cerebral aqueduct had opened, with the weight of the tumour gone. I'm 3 months post-op and I am eternally grateful to the brilliant Charlie Teo and his team. My symptoms are all resolved and I've even started running again. He is an inspirational man who didn't make assumptions about me and has been able to give me my life back by treating the very real medical condition I was faced with. I am not stressed, nor anxious or depressed and I resent that this was the diagnosis given to me by doctors.

Thank you for all the advice and for sharing your experiences to help me gain an understanding in how best to move forward with my own journey. NeoLilly, what a tiresome journey to getting your diagnosis! I'm so glad that you were so persistent and trusted your instincts! I've found that resilience has been so important in being able to get an outcome. For anyone who may read this in the future, please just trust your instincts. This is not to say that you are unwell but pursue answers until you're satisfied that every avenue has been explored.

Much love and healing to all xx
 

anjou

Active member
Thanks for the update!! Glad that you're doing well and that the tumor was benign
 
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